Living with Distichiasis-lymphedema syndrome
A genetic condition that causes extra eyelashes and swelling in the legs and feet, often starting around puberty.
Understanding Distichiasis-lymphedema syndrome
The lymphatic system moves fluid and immune cells around the body. In this condition, people develop swelling (lymphedema), usually in the legs and feet, most often beginning around puberty. They also have extra eyelashes (distichiasis) from birth, which can rub the eye and damage the cornea. Some also have varicose veins, droopy eyelids, heart differences, or a cleft palate.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Extra eyelashes (distichiasis)
- Swelling in the legs and feet (lymphedema)
- Varicose veins
- Drooping upper eyelid (ptosis)
- Light sensitivity (photophobia)
- Scratches on the cornea (corneal erosion)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include eye disease specialists, genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in FOXC2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Lymphatic Education and Research Network may keep lists of experts for this condition.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Lymphatic Education and Research Network
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Lymphatic Education and Research Network and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in the FOXC2 gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: lymphedema with distichiasis; lymphedema-distichiasis syndrome
Patient organizations
- Lymphatic Education and Research NetworkDistichiasis-lymphedema syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Distichiasis-lymphedema syndrome.
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